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cedelle
7 years ago

U live each day as if its your last, u dont worry about what hasnt happened, and u have the attitude that screams F**K YOU!!!! Xx


shynini
7 years ago

I am really really sorry for this answer, but you will not:( I think that people, who have some disease have to struggle with it every second of the day…but this is not the point – the point is that you have things to fight for:)your family, friends, things you like, your love or just feeling that you can do the stuff alone! I do not want to scare you more than you are, but this fear is normal from beginning and later I hope you will find your own way how to deal with it…or you just need time…hold on!


shynini
7 years ago

or yes just scream FU.K YOU:dd it helps too…


cedelle
7 years ago

@shynini your answer is probably better than mine lol but it does help when u can transit from fear to anger 🙂 i get right royally pissed off with it and that seems to work lol xx


shynini
7 years ago

y are right too cedelle:)) sometimes y need to get out everything!

Hey boodle. Have a look at my earlier post – it has a summary of the various prognosis studies that show that, whilst of course a difficult condition, MS is a much slower ‘disabler’ than most people think – you’re looking at 25-35 years on average before even needing assistance with walking (outside of being in a short-term relapse). At ECTRIMs last week there was a presentation on a new tool by a MS registry called MSBase – they have pulled together over 20,000 MSers EDSS scores and disease duration to show how MS progresses over 20 years. You can plot your own disease course and realise what percentile you are in – severity-wise. Of interest is the median course after 20 years of disease duration is only EDSS 3.5 which is still fully ambulatory without assistance. So, if statistically, a newly diagnosed person has 20 years of full ambulation and should only need assistance after more like 30, then maybe your fear might be able to be reduced a bit? Equally, this doesn’t account for the multitude of developments in therapies as seen at ECTRIMS last week (I might post separately about this). Yes, you could do worse than statistically average (by definition, 50% will do worse) but you could do even better and MS be a nuisance and nothing more. So stay positive, cherish every day (and scream FU when you want!). Someone reminded me recently of a great quote from Michael J Fox in relation to his Parkinsons – “If you get caught up in [thinking about] the worst case scenario and it doesn’t happen, then you’ve wasted your time. If you get caught up in the worst case scenario and it does happen, you’ve lived it twice.” Not a bad tip…


mrshawk
7 years ago

Honestly, i keep reminding myself of the stats…. most people (not all) dont have to use a wheelchair in their life and especially not full time… so why not let yourself be grouped in with most people 🙂
Also there are symptom managment drugs and DMD’s now and diets and exercise and all of these things that make it managable…

The best thing my new neuro said to me was “MS is a managable disease…we will work together to ensure your life goes as planned”

This was wonderful to hear! Dont be scared… be happy we live in the time that we do!


msue62
7 years ago

Keep posting on here that will help a bit. Scream when you are home alone but don’t frighten the cat. Hug the cat. Hug anyone else that you feel you can. Remember that there will be times that are good again really there will be. Sadly it is frightening thing but lots of things are frightening. You are not alone and here you will find many different ways of dealing with your feelings. Keep going. Stay in touch. X ♥ 🙂


chris75
7 years ago

The way I have come to deal with that question, realisation, emotion, is to reason that we all only get one life and we can choose between living it in the best way we are able to, with the things/challenges we have forced upon us, or we can fill it with frustration, anger and worry over ‘how it might be’
I have decided to do the former, for my sake and (more importantly to me) my Sons.

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